“Tourette’s Is a Lonely Place”: an Interpretative Phenomenological Analysis of the Personal Experience and Identity of Adults with Tourette’s Syndrome

Abstract

Research suggests that adults with Tourette's syndrome (TS) may face unique challenges in their everyday life due to their condition. To date, however, only a limited number of studies exist in relation to their life experiences and conception of identity. This study, which we believe to be the first of its kind, aimed to expand the literature by 'giving voice' to this population, and to evaluate the social and personal cost of living with TS during adulthood. Semi-structured interviews were conducted with sixteen adults with Tourette's that focused on how they negotiated their identity and experiences. Transcripts of recorded interviews were subjected to interpretative phenomenological analysis. Three superordinate themes emerged: a) "Incorporating Tourette's syndrome into self" revealed two divergent ways in which TS was merged into the participants' selfidentity, either by reconciling with it or fighting against it; b) "Interpersonal interaction" covered issues relating to negative and supportive ties as a result of their condition; and finally, c) "The solitude of Tourette's syndrome" described the loneliness that stems from the condition. The current findings suggest that the experience of the participants is a multidimensional one related to self-identity threat, social withdraw, and self-stigma. Implications for clinical practice on the topic are discussed.

Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences

“…TDs also impact upon the family too: interviews with parents of children with TS describe having to cope daily with tic-related challenges, such as seeing their child have painful tics, disruption to daily routines, and financial difficulties arising from additional caring responsibilities and tic-related behaviors [16]. The visible nature of tics often attracts attention from other people [17], and the negative impact of chronic tics on social relationships is widely known: stigmatization from others, discrimination, isolation, bullying, and social exclusion arising from TDs are common interpersonal issues found across the life span [6,18]. The consequences of childhood rejection and stigma can be long-lasting, with adults in one study describing purposely avoiding others to evade ridicule [18].…”

“…The visible nature of tics often attracts attention from other people [17], and the negative impact of chronic tics on social relationships is widely known: stigmatization from others, discrimination, isolation, bullying, and social exclusion arising from TDs are common interpersonal issues found across the life span [6,18]. The consequences of childhood rejection and stigma can be long-lasting, with adults in one study describing purposely avoiding others to evade ridicule [18].…”

“…Social support is an important resource in coping with chronic conditions [19], and may help lessen the detrimental impact of TDs upon psychosocial well-being of individuals with TD and their families [20]. Receiving social support from others with similar lived experiences can help reduce isolation and aide adjustment and coping with tics [16,18,21]. Wadman et al [17] report how young people may find it difficult talking to their non-TS peers about tics-for example, being concerned about others' reactions and perceptions-and suggest learning about other strategies people with TS use to educate others could be beneficial.…”

“…Furthermore, increased perceived social support among parents of children with TD was associated with emotional and practical coping mechanisms that helped manage tic-related difficulties [20]. However the relative rarity of TDs means local support-particularly for adults with TD-is seldom accessible [18].…”

“…For individuals with TDs and their support networks, online support communities could potentially provide a viable outlet to find social support from peers facing similar tic-related challenges, which subsequently may facilitate management of tics and aid their psychosocial well-being. People with TS have described how they may conceal and suppress their tics in public [17,18,30]: people with TS may have more control over how they present themselves online, and tics (and common comorbidities) may interfere less in seeking out online support compared with face-to-face. Previous research has highlighted the importance of peer acceptance and supportive friendships in providing practical and emotional support [6], but to date there has been little exploration of social support from peers with TDs.…”